How successful are diets for cfs?

[Dainty]

I still get occasional starch cravings (usually when feeling low, or unwell due to PEM), but resist them as much as possible.

See, I don't see those cravings as an "addiction" at all. Seems perfectly reasonable that when a sufferer's body is experiencing profound exhaustion (comparable to marathon runners' after a race) it would legitimately need a food easily converted into energy.

I know my PEM/PENE has been so severe at times I spent hours barely able to breathe. I would take long pauses between each breath as I gathered the energy to take another. Personally, I'd understand if during those moments of near shut down my body is more focused on survival than "well-established" ideas of what's good or bad for us.

It's a case of listening more to the body than to the brain

In other words, because my approach does not align with mainstream nutritional wisdom you've concluded I'm not actually listening to my body; I'm just another poor gullible sufferer tricked by listening to her brain.

Those familiar with my unfolding recovery story are no doubt giggling as they read this.

Appreciate the advice but I'm good, thanks!

 

[Valentijn]

I'm not the person you asked, but I think it's fairly well-established that sweet foods are often craved, and that they are bad for us if the sweetener is sugar or one of several other artificial sweeteners.

And what if it's more quick energy that your body is demanding NOW? I have rare episodes where I get cravings too, and trying to ignore them just leaves me sicker. I had similar cravings when I first came down with ME and had started back to class. I'd try to use will-power to get through them, and then I'd suffer for it.

I had an episode last week, where I really craved fatty food after making a mild attempt to lose weight. Eventually I ate about 1000-1500 calories worth of peanut butter, lost several pounds overnight, and immediately felt better.

Sweet foods aren't always bad for us. They are fuel, and sometimes we need that fuel, even if we don't understand why we need it.

 

[MeSci]

And what if it's more quick energy that your body is demanding NOW? I have rare episodes where I get cravings too, and trying to ignore them just leaves me sicker. I had similar cravings when I first came down with ME and had started back to class. I'd try to use will-power to get through them, and then I'd suffer for it.

I had an episode last week, where I really craved fatty food after making a mild attempt to lose weight. Eventually I ate about 1000-1500 calories worth of peanut butter, lost several pounds overnight, and immediately felt better.

Sweet foods aren't always bad for us. They are fuel, and sometimes we need that fuel, even if we don't understand why we need it.

I wasn't criticising anyone or telling anyone what to do, mainly saying what I know and what works for me. I would not have a problem with eating a lot of fat anyway - there is evidence that the 'fat is bad' orthodoxy is wrong. I've lost all my excess weight while consuming plenty of fat.

I can't recall an occasion lately when my own body seemed to be specifically demanding carbs, although it still does occasionally demand that I eat something in a hurry. The urge seems to be coming from my gut, which feels very empty at such times. I get this much less often since going low-carb.

I would guess that a common cause of carb cravings would be low blood sugar. Blood sugar is much more stable on a low-carb diet, which I guess is why I rarely get the 'EAT NOW!!' urges now.

Personally I avoid sugary foods. My body will make glucose out of the other stuff I eat when it needs it. It works so much better now!

 

[Beyond]

Sadly, it is well known we get cravings for the food we have intolerances/sensivities to. I´ve experienced this all my life with pasteurized milk, white flour products, breakfast cereals... And I know other person that had cravings for tomato and after stopping it her eczema vanished.

Fortunately the body can be corrected in this apetite for bad stuff. Now I crave for example raw juices, good meat, potatoes, natural food... I feel too good with them to not craving (especially juices)! And now I loathe unhealthy, processed stuff, in general. A victory that has long term effects.

 

[Fogbuster]

Avoiding foods that my body doesn't like and listening to my cravings has been a key factor in my healing process. This basically shakes out to a rudimentary form of muscle testing.

Even if there's a food I have a long history of tolerating, if I don't feel like eating it I've learned to go the extreme of even allowing food to go bad rather than "just finish it up" because one meal where it's not right for my body has major consequences. My body is pretty smart about what it wants, and I've learned my life is a lot more simplified if I just give it what it's asking for and don't force anything upon it.

As I've been experiencing dramatic improvement this past year my diet has naturally branched out from the 3-5 foods it was at for so many years prior, and before that it was often down to one food or even no foods as I was forced to rely on nutritional IVs because any food caused life-threatening reactions. I've never intentionally tried to expand or limit my diet; I'll go through phases of trying new things when my body is ready for it and will retreat to old standbys when, for whatever reason, my body can only physically handle those.

I don't need to understand it, I just need to follow the rules and no one gets hurt. lol

Very interesting. I believe in this entirely. Is there any form of reading, or a book I can read which you can recommend that helped you become more in touch with what you body "needs" rather than "wants".

Best wishes
Jamie

 

[knackers323]

See this page/thread.

I read the page, very interesting. Congrats. So what is your diet? Low carb? How long did it take to see improvement and do the improvements continue over time or only seem to take you so far?

 

[MeSci]

I read the page, very interesting. Congrats. So what is your diet? Low carb? How long did it take to see improvement and do the improvements continue over time or only seem to take you so far?

It's quite hard to answer without ploughing through my health diaries which are on paper rather than online! I do have a summary on a flash drive but it's not within reach and I don't want to take it out of my bag as I might then forget to take it with me when I go out tomorrow. I may have already given the details in the thread I linked to and/or others.

The diet is gluten-free, low-grain, low-sugar, and I am also vegan (not for health reasons).

The improvements were gradual and came at different times, although the weight loss started very quickly after I ditched gluten (maybe a week).

Other improvements came within months. I have had a few setbacks, which I have sorted out by identifying and eliminating a problem food (notably chestnuts, which I hadn't realised were high-carb), and/or taking a short course of grapefruit seed extract (a natural antibiotic which helps my gut).

I also take supplements, which I started at various times, so it's impossible to know exactly what did what. Mine are detailed here.

Is improvement continuing? I'm not sure, but I have survived a recent spell of continuous stress and repeated exertion with hardly any PEM. Usually exertion and stress mess up my bowel function, but not this time.

There are so many variables, such as exertion, time of year, etc. I have re-started using a UVB lamp for Vitamin D, and my brain was a lot clearer today, but it could be a total coincidence!

You may find other people's regimes suit you better than mine, so why not read the whole leaky-gut thread to get more ideas?

 

[Dainty]

Very interesting. I believe in this entirely. Is there any form of reading, or a book I can read which you can recommend that helped you become more in touch with what you body "needs" rather than "wants".

Best wishes
Jamie

I wish there was. Most of what I know is self-taught and reinforced by a few other contacts. I've just now written some lengthy blog posts that you might be able to glean helpful info from. The self-awareness is an invaluable tool, but the process of getting to this level of it has completely turned my life completely inside out in more directions than I thought existed. Who knows, perhaps someday I'll author a book on the subject myself.

 

[maddietod]

I wonder if part of this sensitivity comes from severely limiting food choices over a long period of time. It's the ultimate elimination diet. When you reintroduce something into this pristine environment, it's relatively easy to notice what happens.

 

[brenda]

The main reason to eat an organic natural fooddiet minus high allergenic foods is to help avoid further damage even if there is little improvement as we are dying, after all and one of themost damaging products which cannot be called food as it is anti nutrient is sugar with refined flour next. Cravings will cease once products like this are removed from the diet.

 

[barbican1]

The value in avoiding certain kinds of foods or including dietary supplements in helping with CFS/ME symptoms has been exaggerated IMHO. Diet alone is unlikely to make much difference. If diet was the reason why these symptoms existed then tens of millions of people in places like India, where many people are still malnourished, would have these illnesses

 

[maddietod]

The value in avoiding certain kinds of foods or including dietary supplements in helping with CFS/ME symptoms has been exaggerated IMHO. Diet alone is unlikely to make much difference. If diet was the reason why these symptoms existed then tens of millions of people in places like India, where many people are still malnourished, would have these illnesses

We're all different, and I just keep trying things that might help. I've had a pretty astonishing shift from my dietary changes (see my post #8), and I've changed nothing else before or during this month of Wahls paleo. Also, I lost a fight with peppermint oreo cookies yesterday, and the brain fog and noodle-legs came right back...but only for about 24 hours.

 

[knackers323]

I wonder if part of this sensitivity comes from severely limiting food choices over a long period of time. It's the ultimate elimination diet. When you reintroduce something into this pristine environment, it's relatively easy to notice what happens.

I think there is something to this. I can eat anything and don't think it effects my symptoms but then if I have a break from something like dairy for example and them eat it again I sometimes get slight pain in the stomach. These pains go away if I continue eating it.

The gut may just have to get used to it again? Who knows. There are just too many variables and unanswered questions.

 

[MeSci]

The value in avoiding certain kinds of foods or including dietary supplements in helping with CFS/ME symptoms has been exaggerated IMHO. Diet alone is unlikely to make much difference. If diet was the reason why these symptoms existed then tens of millions of people in places like India, where many people are still malnourished, would have these illnesses

Do we know that they don't?

EDIT - just did a quick science journal search and found this.

 

[MeSci]

Do we know that they don't?

EDIT - just did a quick science journal search and found this.

and this

and this

 

[Daffodil]

I was doing better sticking to my semi-paleo diet lately, and my night sweats were pretty much gone.

yesterday, I cheated with gluten, kidney beans, and quite a bit of cheese.

it is now 5:30 and I have been up for hours feeling hot, sicker than usual, with more horrible brain fog.

Christmas-related cooking might be a problem. also, it I just so hard having enough "allowed" foods to eat in the house at all times. the disease makes me REALLY hungry ..I eat 4 1/2 - 5 meals a day...I have to shop and cook all the time in order to manage this diet, and this is very hard to keep up - especially when one is not well.

still, finding a way to stick to the diet is very beneficial!

 

[Aerose91]

Diet has done nothing for me at all. For years before I got ME my diet has been absolutely impeccable. I have stuck with it throughout this journey but I am continuing to decline steadily. Also, mine onset extremely acutely with encephalitis so it's hard to relate that to a digestion problem.

 

[Beyond]

I feel the responsability of giving a straight answer in my shoulders...

How succesful are diets for CFS?

Not very succesful, but diet is the foundation of anything you will be doing for healing, especially if you have digestive symptoms. Eating crap helps no one to regain health.

 

[lansbergen]

I feel the responsability of giving a straight answer in my shoulders...
Not very succesful, but diet is the foundation of anything you will be doing for healing, especially if you have digestive symptoms. Eating crap helps no one to regain health.

Sorry, but I did not diet. I ate and still eat anything my body asks for.

 

[heapsreal]

im mostly low carb but straying abit of late but not too bad but the scales seem to be climbing fast. I think alot of us are insulin resistant, maybe its got alot to do with whacky hormones etc.
I have been craving carbs at night and i find after eating them i sleep better?? but this spare tyre is growing????
To lose weight i find i have to be very strict with the carbs, this time of the years gets hard?